Saturday, April 10, 2010

A New Category and a Tribute to an Old Friend

During my blog-cation last week, one of the things I considered changing about how I manage "The Simple Life" is to change the categories of topics I post. One of the more blurry distinctions in my posts has been the Friday "News" and Saturday "Advocacy" posts. Since I often post news items where someone has been an advocate, or occasionally highlight a news item (like the health care debate) where I feel strongly that advocacy is needed, I'm feeling like those topics are somewhat redundant. They also require the most intense searching, and in my opinion lend the least room for me to add my own voice to the mix. Starting today those topics will be combined into "Good News and Awesome Advocacy" Fridays. Which leaves Saturday open to a new category. By far the posts I received the most positive feedback (though mostly off-line) in the last year were two posts where I broke down autism and sensory integration disorder into layman's language. These are both near and dear to my heart and obviously take up a large portion of the virtual space here. However, The Simple Life is not supposed to be just about autism. My original goal, way back when (over a year ago!) was to provide a space where all special needs could congregate and be considered in the light of faith. In order to do this I need to learn more about other disabilities and put them into Simple Life language. So each Saturday I intend to focus on one particular Special Need, highlighting the cause (if known), the symptoms, the treatments, and, when possible, showcasing a hero(ine).

What better place to start than with one of the first special needs that I became personally aware of. I remember in grade school attending a student assembly where a diminutive, but bubbly girl in a wheelchair was introduced to us as a "poster child" for March of Dimes. Her name was Zel, and she had Spina Bifida. I remember participating in a walk-a-thon, but I'm not sure if it was that same year. I did not know Zel well then, but her grandparents attended the church that I grew up in and would occasionally bring her to church. Eventually we ended up at the same Middle School, though she was one year behind me. She was one of few people that I would sit with during lunch. We "passed notes", giggled over boys and the crushes we had on them, spent hours on the phone, played in the band together (she on clarinet and me on bass clarinet) and in general had a typical Middle School girl friendship. The fact that Zel sat in a wheelchair was of little consequence to me. I learned how to steer her through the maze of school hallways (even down a step or two - good training for my current double stroller days), and after I learned to drive I even figured out how to transfer her in and out of the Volkswagen Rabbit that my parents allowed me to use, and how to fold her chair up to fit in what passed as a cargo space in that car. We didn't go anywhere very exciting - just to the mall or a park to hang out and moon over boys. Zel was upset when I decided to go out of state for college. She helped me sort through belongings to take with me. We managed to stay in touch for a few years. When I came home to visit I was sure to see her and we still "passed notes", though now through the U.S. Mail. The next year Zel also started college, but things didn't go well, and she returned to our home town to figure things out. Somehow after that we weren't able to connect as well. I was in an intense period of schooling. I stayed at my undergrad campus almost year round to do research during the Summers, and then I went on to grad school. I became less boy crazy. I probably did not do my share of holding up our friendship and we drifted apart, though I think both of us would still have considered each other friends. I was quite sad to hear that Zel passed away a couple of years ago due to complications from her Spina Bifida. I think because our relationship was so rich during our school years that I never realized how much Spina Bifida really affected and limited Zel's options. She was such a good friend that it never struck me how hard it would be for her to manage the transition to college, nor did I understand that her "boy-craziness" was in some ways her cry to be loved and accepted by the opposite sex in spite of her physical limitations. I didn't fully appreciate the amazingness of her generally upbeat and happy acceptance of life on life's terms.

Though well understood in terms of symptoms and treatment, the causes of Spina Bifida are not fully known. There is some genetic component to be considered, but environmental factors also come into play. It is one of the most common neural tube birth defects (1 in 1000 births), the group of birth defects that affect the spinal cord and brain. Like all neural tube birth defects, taking folic acid before and during pregnancy is thought to reduce the risk of occurrence. In Spina Bifida this may be related to a difference in how folic acid is metabolized. Early in a child's development (less than one month after conception) the neural tube (the part of a developing child that eventually becomes the spinal cord and brain) does not close completely and at birth a portion of the spinal cord is visible outside the child's body. The child must be immediately given antibiotics to ward of infection and usually within 48 hours surgery is performed to enclose the spinal cord. Before the development of antibiotics, children with Spina Bifida generally did not live long, or if they managed to survive were severely disabled due to complications from infection. Currently even with early antibiotics and surgery, in most cases some level of leg paralysis and lack of bowel/bladder control are inevitable. With the advent of prenatal ultrasound imaging, Spina Bifida can be diagnosed before birth, which has also opened to the door to surgical correction prior to birth. Often further surgeries may be required to address spinal cord deformities (scoliosis) and hydrocephalus (extra fluid around the brain). The goal of all treatment for Spina Bifida is to give an individual as much independence as possible in all areas of life.

In memory of Zel
In comments below please let me know Special Needs that you want to learn more about or tell me about a hero you think the world needs to meet.


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